SILVER2024

SPONDYLITIS ASSOCIATION OF AMERICA

Serving the spondyloarthritis community

aka Spondylitis Association of America   |   Encino, CA   |  http://www.spondylitis.org

Mission

To be a leader in the quest to cure ankylosing spondylitis and related diseases, and to empower those affected to live their lives to the fullest.

Ruling year info

1984

CEO

Cassie Shafer

Main address

16430 Ventura Blvd Ste 300

Encino, CA 91436 USA

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EIN

95-3890767

NTEE code info

Arthritis (G51)

Medical Specialty Research (H90)

Health Support Services (E60)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Public and Patient Education

SAA provides public and patient education programs to facilitate early diagnosis, promote effective treatment, and encourage self-help care for optimal quality of life. 

SAA’s website, www.spondylitis.org(http://www.spondylitis.org/) , is updated regularly with the latest news and information about spondylitis treatment, medications and research. In addition, information about SAA events and seminars, supportive programs and the online Message Board community can also be found here.

SAA hosts free educational seminars in different metropolitan areas throughout the United States each year. All seminars include an experienced rheumatologist who provides an overview of spondyloarthritis along with current medications and other available treatments. Secondary speakers complement the program with presentations on other topics of interest including exercise, physical therapy, occupational therapy, the emotional impact of living with spondylitis, etc. These seminars provide an opportunity for attendees to ask questions and meet other people from the area impacted by spondylitis.

SAA offers free online seminar events, referred to as webinars. These webinars allow people to learn about specific spondylitis-related topics in the comfort of their home without having to travel. SAA hosts approximately 3 webinars each year; the live event is free and open to everyone in the spondylitis community. 

SAA provides a library of audio interviews (podcasts) to SAA members, which include questions posed to spondylitis experts to provide information on a wide range of topics including spondylitis symptoms, medications, treatment, complications, etc. Members are also asked to submit their own questions to be answered during future podcasts.

Population(s) Served
Adults

For over 35 years, the Spondylitis Association of America
has encouraged and facilitated collaborations among prominent researchers as a
means of accelerating advances in spondylitis research, diagnosis and
treatment.

SAA’s
participation in the TASC Genetic Study (Triple A Spondylitis Consortium)
genetic study helped researchers identify two genes (ERAP1 and IL23R) that, in
addition to HLA-B27, increase the risk of developing spondylitis. Since then,
scientists announced the discovery of additional genesthat may provide further pieces of the genetic puzzle that makes
up this crippling disease. SAA served as the national subject recruiting center
for the TASC Study and provided amajor
portion of the subjects for the project -- without whom none of the research
would have been possible.

While
SAA now serves a large community of people living with spondylitis, there are
many more who are not yet diagnosed. Our goal is to reach the hundreds of
thousands of people who do not yet know the cause of the fatigue and pain they
experience and thus are deprived of much-needed treatment.

Population(s) Served
Adults

SAA developed the first-ever training
program for emergency first responders in collaboration with the National
Association of Emergency Medical Technicians (NAEMT). The program, "Ankylosing
Spondylitis: Managing Patients in an Emergency Setting, A Primer for First
Responders" which includes a video training module, is available to the
more than 800,000 emergency medical technicians and paramedics across the United
States. This program has also been accredited by CECBEMS (Continuing Education
Coordinating Board of Emergency Medical Services) and first-responders can
receive one pre-hospital credit.

In addition, SAA collaborates with
medical institutions to offer physicians’ CME courses. Recent collaborations include partnering with
Cedars-Sinai Medical Center to offer physicians the CME course, "Medical
and Surgical Approach to Spine Disease and Spine Deformity in Ankylosing
Spondylitis" as well as the CME for rheumatologists and other clinicians
titled "The Diagnosis and Management of Ankylosing Spondylitis" in
partnership with Albert Einstein College of Medicine and Montefiore Medical
Center.

Population(s) Served
Adults

SAA sponsors over 35 support groups stretching across the
US from Anchorage, AK to Miami, FL. These groups focus on education and support while providing a safe and
friendly environment for people to discuss the day-to-day practical challenges
of living with spondylitis. SAA recruits
and provides guidance to support group leaders through an interview screening
process, trainings, and quarterly conference calls. These groups also play an integral role in
helping to increase awareness in their communities through their participation
in local health fairs and fundraisers.

SAA’s peer network program provides an opportunity for
one-on-one support within the spondylitis community. People newly diagnosed with spondylitis are
matched by Programs staff with peers who have years of experience managing their
own spondylitis symptoms. This program
helps people newly diagnosed with spondylitis feel less isolated, understand
the importance of learning about managing the disease, and feel supported and
encouraged to empower themselves for optimum health. Peers regularly communicate by email or
telephone, with Programs staff checking-in regularly with each peer match to
ensure a successful program. 

Spondylitis.org has an online community of
message boards that provides an opportunity for spondylitis patients and their
loved ones to start and contribute to discussions related to managing
spondylitis. In addition, SAA
participates on several social networking sites including Facebook, MySpace, YouTube and
Twitter. SAA staff provide updates and
information through these online communities to promote SAA’s mission.

Population(s) Served
Adults

Where we work

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The Spondylitis Association of America was founded in 1983 to address the unmet needs of people affected by ankylosing spondylitis, a crippling form of spinal arthritis that strikes young people, by disseminating educational information, advancing medical and scientific research and providing emotional support programs.

Prior to SAA's inception, there was no resource for educational materials, no patient support networks, and little to no medical research was being undertaken in the United States. SAA was the first and remains the largest resource in the US for people affected by ankylosing spondylitis and its related conditions.

For over 30 years, SAA has provided patients and their families with the most up-to-date medical information as well as direct access to the thought leaders in the field of spondyloarthritis.

SAA's Strategic Plan supports and drives a vision of a world free from the pain and disability of ankylosing spondylitis and related diseases and encompasses three distinct areas of focus:

• Serving the diagnosed by means of education and support
• Serving the undiagnosed by championing accelerated diagnosis
• Advancing medical research to uncover the causes, develop more effective treatments and ultimately discover a cure

Goal #1: Serving the diagnosed. Long-term strategy: Create and maintain support and educational programs for those affected. Near-term activities:

• Development of SAA's Management Tool for Spondylitis -- the world's first cross-platform application / website that will allow people with spondylitis to track their symptoms, medications, and much more.

• Treatment guidelines -- SAA, in conjunction with SPARTAN and the ACR, is developing practice guidelines in spondyloarthritis to reduce inappropriate care, minimize geographic variations in practice patterns, and enable effective use of health care resources.

• Spondylitis.org and SWIFT - Spondylitis Web Info for Teens -- SAA;s primary websites receive more than 300,000 unique visitors per quarter and are our primary avenue of reaching the 2.7 million adults in the US with spondyloarthritis.

• Support Groups -- SAA maintains Support Groups in 30 states and provides extensive training to Support Group Leaders so that they are able to educate, inform and support the patients and family members who attend meetings across the country.

• Educational Materials -- SAA produces the largest library of print and audio/video educational materials in the field of spondylitis in the US.

• Spondylitis Plus -- SAA's flagship, advertising-free news magazine provides news and information to the spondylitis community

• Managing Patients in an Emergency Setting -- SAA's Emergency First Responder Education Program provides critical training to EMTs, and other first responders in the proper care and handling of patients with neck and/or spinal fusion.

Goal #2: Serving the undiagnosed. Long-term strategy: Reach out to new professional and patient populations to raise awareness of the disease. Near-term activities:

• BackPainTest.org -- In July 2011, SAA's Screening Tool for Ankylosing Spondylitis went live on its dedicated website.

• Attendance at the American College of Rheumatology's Annual Scientific Meeting -- Each year, SAA joins well over 10,000 clinicians and researchers where advances in disease management and research are shared.

Goal #3: Advancing medical research. Long-term strategy: Facilitate research, collaborate with researchers, and providing patients the opportunity to participate in clinical trials. Near-term activities:

• Spondylitis Patient Registry. The registry will be a compilation of three existing patient databases that have been used in ankylosing spondylitis research.

• TASC Genetic Study -- SAA provided the seed money that led to the creation of the TASC Genetic Study (Triple A Spondylitis Consortium) whose researchers, have identified multiple genes that increase the risk of developing spondylitis.

Prominence in the field. SAA is the only nonprofit patient advocacy organization in the United States dedicating all of its resources to improving the lives of those affected by spondylitis. As the undisputed frontrunner in spondylitis, SAA enjoys a worldwide reputation for excellence and is highly regarded among clinicians, researchers and the constituents we serve.

Medical and Scientific Advisory Board (MSAB). SAA's MSAB is composed of many of the most highly regarded spondylitis thought leaders in North America. This panel of volunteer physicians ensures that the medical and scientific information SAA disseminates is accurate and up to date.

Strong collaborative relationships with Industry, Academia, Media, Peer organizations and Government. SAA has a history of working closely with like-minded organizations and groups to advance shared goals.

Very low staff turnover. SAA's professional staff have served an average of 7.7 years with several employees serving between 10 and 17 years. Employees enjoy the organization's commitment to continued professional development in the form of paid seminars, webinars, training publications and materials and professional association memberships, leading to strong employee loyalty and a sense of pride and ownership in their individual contributions to the overall success of the organization.

Consistently highly rated by nonprofit watchdog organizations. SAA has received Charity Navigator's four-star rating four years in a row and has earned a score of 64.16 out of 70 for fiscal accountability and transparency. The Spondylitis Association of America was also named as the ninth-highest rated national charity in America by a recent analysis from personal finance news website MainStreet (www.mainstreet.com), also reported on MSN Money.

Long term support from major donors. SAA's major individual funders have supported our mission for an average of 10 years, with some giving consistently for as many as 27 years. This commitment and loyalty from our largest donors provides a source of sustainable income in support of our long term goals.

Since 1996 and our first published website we have been on the cutting edge of technology in serving our mission (e.g. social media, online interactive support and educational programs, etc.) SAA embraced budding technological advances early on and consequently, is ahead of the curve when it comes to engaging our audience via social media, crowdsourcing and mobile applications.

In 1985, SAA produces the first comprehensive patient self-management book, Straight Talk on Spondylitis, which receives high praise from medical professionals worldwide.

In 1999, SAA and the University of Texas (UT) form the North American Spondylitis Consortium (NASC) - a consortium of 10 university medical centers and SAA. The National Institutes of Health provide a $6.5 million grant and designate SAA as clinical coordinating center for the AS Family Genetic Project.

In 2005, SAA begins supporting a second major research project. “The Development of an Online Screening Tool to Identify People at Risk for AS”, with Dr. Michael Weisman as Principal Investigator.

In 2008, TASC Genetic Study identifies two new genes, ERAP1 and IL23R, that play a role in susceptibility to spondylitis. This is the most significant breakthrough in AS research since HLA-B27 was uncovered 34 years ago and SAA played a significant role in making the study possible. SAA oversaw the nationwide recruitment of patients and families for the study. Together with HLA-B27, these genes account for roughly 70 percent of the overall cause.

In 2009, SAA completes development and production of the first-ever training video for emergency first responders, titled "Ankylosing Spondylitis: Managing Patients in an Emergency Setting, A Primer for First Responders". The program is accredited by CECBEMS (Continuing Education Coordinating Board for Emergency Medical Services);

In 2010, two more genes implicated in AS, ANTXR2 and IL1R2, are discovered by the TASC genetic study.

In 2011, the TASC genetic study uncovers three variants in the RUNX3, LTBR-TNFRSF1A and IL12B regions of the genome as well as additional areas that also seem to play a role - PTGER4, TBKBP1, KIF21B and CARD9. Other genetic suspects include CDKALI, TRADD and STAT3.

In 2012, the release of the first ever epidemiology study data conducted by the CDC in the US, and supported by the SAA and by SPARTAN. The CDC researchers used the data and statistical methodology from the SAA Screening Tool for Ankylosing Spondylitis as a foundation for the patient questionnaire that was developed by the CDC for the 2009/2010 study. To-date, manuscripts authored by the CDC researchers, Drs Reveille and Weisman have been accepted for publication by JAMA and by Arthritis and Research, the ACR peer review journal. Additional manuscripts are forthcoming.

In 2013, SAA completed Phase I of a national patient registry on ankylosing spondylitis. By combining three existing patient databases that have been used in research, the composite database can look at thousands and potentially tens of thousands of patients and be able to track health trends, disease severity over time, age, gender, race and many other factors to improve understanding of the disease.

Financials

SPONDYLITIS ASSOCIATION OF AMERICA
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Operations

The people, governance practices, and partners that make the organization tick.

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SPONDYLITIS ASSOCIATION OF AMERICA

Board of directors
as of 05/15/2024
SOURCE: Self-reported by organization
Board co-chair

Michael Pianin


Board co-chair

Eric Goldstein

Craig Gimbel

No Affiliation

Ellen Carroll

Paula Olsiewski

Spondylitis Association of Ame

Batya Bilmer

Jill Miller

Organizational demographics

SOURCE: Self-reported; last updated 7/18/2022

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender

Race & ethnicity

No data

Gender identity

No data

Transgender Identity

No data

Sexual orientation

No data

Disability

No data